Update 20 April, 2009

Everything seems to be going okay so far. Isaiah was running a low grade fever yesterday and had several dirty diapers by noon, so Erica called his Oncologist at Duke who recommended we take him to the ER. I stayed at home with Levi and Sarah while Erica took Isaiah to the hospital. Isaiah's doctor at Duke had called our local hospital to tell them that they were coming ... and that Isaiah was neutropenic. Isaiah had a room waiting for him when they got there. The ER doctor & nurses took some blood and gave Isaiah some antibiotics in case he had an infection. Because he was neutropenic and was running a low-grade fever Isaiah was transferred to Duke University Hospital late last night via ambulance (hospital protocol). Erica came home and grabbed some clothes and drove up to meet him. Once at Duke, more blood was taken to run cultures/tests.

This morning Isaiah's blood tests came back negative for bacterial infection, his fever was gone, and he was no longer neutropenic. His blood counts were on the rise ... not sure why, I believe someone at the hospital told Erica the anti-biotics could have played a part. This morning we were all going to drive to Duke for Isaiah's scheduled hearing test and CT scan.

The hearing test came back normal. We'll get the results from the CT scan tomorrow. The hearing test and CT scan are part of Isaiah's mid-point check-up since we're done with his third round of chemotherapy. Etoposide, one of the chemo drugs, can damage hearing - reason for the hearing test. The CT scan will check Isaiah's brain and eye orbits for any cancer growth. All normal protocol. Isaiah will have his fourth round of chemotherapy next Monday & Tuesday along with another EUA Monday morning to make sure his right eye is still cancer free.

Beyond all the medical appointments, Isaiah is doing great. He runs around and plays. He looks sick - probably from all the chemo, but continues to act normal. Erica and I regret cutting his hair. I was tired of people thinking my son was a girl, but cutting it all off doesn't look that great right now. His hair will be able to grow back shaggy once all his treatments are over. Levi and sarah are doing great. Levi will finish his first year of preschool at the end of May. Sarah is getting big and smiling all the time. She now prefers to sit up and look around instead of laying down. Bills continue to pile up ... we're praying that our tax refunds will come in soon ... we're also praying that our bankrupt state will be able to pay refunds.

We're looking forward to my Aunt to fly in on Saturday and stay to help while Isaiah gets his 4th round of chemo. We also heard back from the Make-a-Wish Foundation that Isaiah is eligible to receive a wish. Folks from the foundation should be contacting us in the next month or two. We've tried to explain to Isaiah that he can pick anything that he want (to do, receive, etc.). He doesn't quite grasp the concept of getting anything that he asks for at the end of his treatment. He loves the movie Cars and plays with cars all the time ... maybe a Nascar race or DisneyLand.

Getting Ready for Round 3!

I use the exclamation point on the title because Isaiah's treatment is flying by! I haven't updated the blog as I promised I would. There are a couple factors why: I work longer hours during the week so I have off on Mondays and when I am home from work I don't want to get back on another computer from having sat at one most of my day.

Isaiah has been doing great! So good in fact Erica questioned whether the chemo was even working. His blood counts have all been at the low end of normal. We did have a scare last week when his hemoglobin count was read wrong over the phone to us, which then had us drive to Duke thinking Isaiah would have to have a transfusion. The nurse drew his blood and told us his levels were good.

His prosthesis looks great. You can hardly tell unless you look at him a certain way, The color is sometimes off. That's because Isaiah's good eye can change color from dark blue to a gray/greenish blue. Most of the time his eye is the latter color.

My dad flies in tomorrow around noon and will be with us till late next week. I'm looking forward to seeing him. After several trips out to Nebraska he's finally making the trip.

I applied for a job back in Georgia. Erica and I plan to put our house on the market soon ... we have to paint and make a few minor repairs (door molding, window screens, carpet cleaning ... all damage caused by our wonderful pets). After everything that's happened to us over the past couple years it will be nice to live closer to family. I will probably interview in late April/May and if accepted won't move till late summer.

Of course Isaiah goes in for his fourth round of chemo on Monday/Tuesday. Two more after that. Sarah continues to grow and is smiling and cooing a lot now. Sarah's eyes were examined the week before last for any evidence of retinoblastoma ... the tests came back negative. The opthalmologist mentioned they wanted to do an EUA (examination under anesthesia) when she's 6 months old. Because retinoblastoma can be both genetic and sporadic, the EUA will help in early diagnosis with Sarah ... BUT ... base don the way the cancer presented itself in Isaiah, it is most likely a sporadic case. We have a genetics appointment in May where we'll receive a definitive answer. We're hoping the results will come back before they want to put Sarah under.

I'll try to keep everyone updated. If you really want updates feel free to call.

Blood Counts from Monday 9 March 2009

We just received Isaiah's blood counts yesterday. Apparently there was a hold up somewhere in the chain. Isaiah continues to do well. He's still playing and running around like he usually does. The color in his prosthesis is off a bit so we'll schedule an appointment for it to be changed. Mr G, Isaiah's ocularist or Anaplastologist, hand painted the eye before putting it through a kiln. Isaiah's hemoglobin is the lowest it's been since starting chemotherapy ... 8.7. We're hoping it doesn't go down below 8 - he'll have to have a transfusion to bring the Hgb count up. We'll find out next Monday. If it's lower then we'll probably be up at Duke on Tuesday.

Monday's counts:

Hgb: 8.7
Platelets: 168
WBC: 4.1
ANC: 1066

Round 2 - Day 4 ... Everything is Going Well!

Isaiah hasn't acted sick or even been sick this round. The worst days, as Isaiah's Oncologist told us to expect, are days 4-7. We continue to pray that Isaiah will stay healthy and not feel the negative effects of the chemo. I understand the normal effects, I simply don't want my child in the hospital again like he was after the first round.

Erica and I took Isaiah to Florence, South Carolina yesterday for him to be fitted for his prosthesis. The fitting only lasted about 20 minutes, with the Ocularist only messing with Isaiah's eye a couple of times. The prosthesis will be ready by Tuesday. We're driving to Greenville, South Carolina on Tuesday to pick it up.

This weekend is going to nice outside. I've been waiting for warmer weather to hit us so I can let the boys play in the backyard and I can get some work done outside. I plan to extend the garden, put in a large flower bed along the back of the house and deck, and plant a truck load of trees, bushes, and flowers. If I'm pretty productive I'll put up the bird feeders and bath and put lattice around the bottom of the deck.

We'll get Isaiah's blood results Monday afternoon - I'll update the website once I get them.

Round 2 Chemotherapy - Day 1

We're sitting in the Day Hospital with Isaiah, who's almost halfway through today's round of chemo. He had an EUA at the Eye Center this morning to make sure everything was still normal in his right eye ... everything was good. Please pray that Isaiah doesn't get sick from this round and stays home away from theER. I'll write more tomorrow when we all get home ... my cell phone is not the best blog updater. Here are today's blood lab results ... much higher than last Monday.

Hgb: 9.8
Platlets: 435
WBC: 8.2
ANC: 1796

Why Our Country's Health Care System Needs Restructuring

Because our medical bills from Isaiah's surgeries and treatment have started to pile up, I wanted to vent about the greed I've seen in our healthcare system. One surgery that Isaiah had was to put a port-a-cath in his chest so there is one central line to administer chemotherapy, IV fluids, and draw blood from. Duke University billed our insurance company $9748.15 for the surgery, anesthesia, and medicines used. Because Duke is a preferred provider with our insurance company, our insurance company & Duke have already negotiated monetary amounts for hundreds of procedures, medicine, and types of care. This agreed upon amount is $1167.89 - a difference of $8580.26. Duke University Hospital wanted to charge us more than 830% of the amount they negotiated with our insurance company. Duke is not the only healthcare provider who does this. I have bills from several other doctor's offices and hospitals trying to do the same. So I am not targeting Duke - just using them as an example.

Trying to charge the customer almost 1000% more than what they have readily agreed to accept as payment from the insurance companies is absurd. This greed is why our healthcare system is in shambles and will ultimately fail. I am blessed to be the father of three beautiful children, have a gorgeous wife who can put up with me, have an awesome career with a good salary - this same career provides me with excellent benefits. There are families who own businesses and can't afford insurance or who work jobs that can't or don't offer health coverage. Without insurance these same greedy hospitals would charge these families the exhorbant 800-1000% more for the same care they readily accept from insurance companies.

I didn't used to think much about universal healthcare coverage or the surrounding politics. Now I'm forced to see what these companies have tried to charge my family and realize that there are other families who are not "sheltered or protected" by health insurance. I don't have a great plan on how to correct this, nor do I support a certain political parties' plan - I do believe there is a better way to do things that will prevent hard working families like mine from collapsing financially. These families may not have health insurance or not enough, and then suddenly wake up one morning to go to a doctor to find out their two year old child has cancer ... money lost not being at a job to care for their child, medical bills piling up, potential risk of filing for bankruptcy, losing their home and cars. For those that still believe our current way is great please give me a call and I'll send you our medical bills.

Long Update - 25 Feb 2009

I apologize to all for not updating this page in the past couple weeks. We've gotten back into our normal routine of work, school, chores, parenting, and life. I promised I would provide a rundown of blood counts so you can understand what Isaiah's levels are, how they impact him, and what he's going through. Life over the past couple weeks has been normal. Sarah is about 9 pounds and started smiling. Levi is growing so fast and turning out to be a big kid. Levi, not even 4 years old yet and already weighs 45 pounds and is taller than most boys his age. Isaiah is doing great ... running and playing hard and acting the way he did before we even found out he had Retinoblastoma. Erica is back to her daily routine of herding the chillen's and running the house. I'm back at work. I'll provide a couple of updates. I'll start first with blood counts and provide the Isaiah's counts from the past couple weeks, then update everyone on the ocularist and upcoming schedule.

Understanding Isaiah's Blood Counts

Chemotherapy is an anti-cancer treatment that is designed to kill cancer cells. Because chemotherapy drugs can't specifically target cancer cells - they target our bodies fast growing cells which include blood cells, gastrointestinal tract, and hair. After Isaiah receives chemotherapy, his blood counts will hit bottom or nadir about 7-10 days post chemotherapy and then start working their way back up to near-normal levels. I will provide four specific counts: HGB, Platelets, WBC, and ANC. I'll provide a quick reference on the right hand side of the page as well.

HBG - Hemoglobin, red blood pigment. Low HGB levels indicate you are anemic, which means your body has a decreased ability to carry oxygen to body tissues & cells. Anemia symptoms include weakness, fatigue, looking pale. Normal HGB levels in a boy Isaiah's age are 11.5-13.5. Isaiah's Oncologist will order a transfusion if his HGB levels drop below 8.0.

Platelets - helps blood clotting in order to stop bleeding from injury. Decreased platelet count is called thrombocytopenia. When Isaiah's platelet counts are low we have a call Duke if he is injured and continues to bleed. If it's bad or an injury that is has moderate to severe bleeding we'll either take him to the emergency room immediately or call 911. Symptoms of low platelet levels are easy bruising. Normal platelet counts in a boy Isaiah's age are 250-600. Isaiah's Oncologist will order a transfusion of platelets if his levels drop below 20.

WBC - White Blood Count - fight infection, other white blood cells carry immunity, protect against pathogens, and control inflammation and damage of tissues in the body. If Isaiah's counts are really low then he could be given a shot of a hormone drug called neupogen, which stimulates the bone marrow to produce more blood cells. Normal WBC count in a boy Isaiah's age are 6.0-15.5 or 4.0-10.0 (from a Duke booklet) (= 4000 - 10,000).

ANC - Absolute Neutrophil Count - shows the bodies ability to fight off infection and includes different calculations of white blood cell counts to produce [WBCx(%Neutrophils + %Bands) = ANC]. Neutrophils fight bacterial infections by surrounding and attacking foreign cells. Bands are young neutrophils. A high band level around the time of nadir usually indicates a near future rise in your WBC, neutrophils, & ANC. Normal ANC levels are between 1500-8000. If the number is less than 500 you are considered neutropenic or immunocompromised. This means that Isaiah has a severely reduced ability to fight infection and therefore we take drastic steps to ensure he remains safe. These steps include constant hand washing, keeping the house clean, staying out of public and sick people. If Isaiah does get sick, his temperature will rise as his body attempts to fight the infection. If his temperature is above 100.3 then we'll call Duke and then take him to the hospital to be admitted for treatment and anti-biotics. This will most likely require a trip by our local ER and then drive to Duke. Because Isaiah has a port-a-cath, a high temperature could also indicate an infection in the port, which would require being admitted to the hospital and probably have the port removed and another put in. If Isaiah's ANC is 1000 or below, we'll have to delay chemotherapy - wait another week and check again.

HGB (11.5-13.5) - transfusion if under 8.0
Platelets (250-600) - transfusion if under 20
WBC (4.0-10.0)
ANC (1500-8000) - considered neutropenic or severely immunocompromised if under 500.

I hope you had as much fun reading that as I did typing it (sarcasm). If a transfusion is ever needed, we'll go to Duke because they have better procedures and safeguards than other hospitals in our area.

Isaiah's Recent Blood Counts (you'll be able to see the levels drop and then rise as his counts come out of nadir - I will update these counts every Tuesday with Monday's test results)

9 Feb 2009 (+7 days post chemo)
Hgb: 10.4
Platelets: 77
WBC: 2.6
ANC: 1000

16 Feb 2009 (+14 days)
Hgb: 8.8
Platelets: 94
WBC: 4.9
ANC: 245

19 Feb 2009 (+17 days) - Erica and I wanted this test outside of the normal schedule because Isaiah was close to needing a hemoglobin transfusion and was neutropenic. His ANC was higher and then drops the following Monday. This may be because Isaiah was fighting off a virus - his temp registered at 99.8 degrees two days in a row last week.
Hgb: 9.4
Platelets: 225
WBC: 4.4
ANC: 616

23 Feb 2009 (+21 days)
Hgb: 10.0
Platelets: 477
WBC: 4.8
ANC: 480

Update on the Ocularist


I did end up receiving a call from the ocularist in Greenville, SC - who accepts our insurance. I was originally concerned about Isaiah being awake while being fitted for his fake eye. This process involves taking a dental mold of the eye (implant). Mr. G, the ocularist, mentioned that he started his career off at a very large Eye Center on the East Coast more than 30 years ago where he fitted and made prosthetic eyes for several hundred children diagnosed with Retinoblastoma. Mr. G mentioned that he has never needed a child to be under anesthesia to get an accurate fit. He'll be able to get a fit - but Isaiah won't like it. The process won't hurt. Isaiah will just have to deal with a strange man messing with his eye a couple times.

We decided to use the ocularist in Greenville, SC because he accepts our insurance and due to his experience with children. The Duke Eye Center uses an ocularist in Burlington, NC - who up until the end of 2008 was the only ocularist in North Carolina that accepted our health insurance (a very large provider). I called Duke's preferred Ocularist a second time to ask about the insurance process and told a different woman that I was previously told that they didn't accept our insurance and we would have to pay out of pocket and then be reimbursed. She seemed surprised and said the other woman had given us inaccurate information - they indeed accepted our insurance, we just had to pay upfront and then be reimbursed. I believe that means they don't accept our insurance. That's pretty much like saying they accept cash as a form of payment.

Everything is great now. We'll take Isaiah back up to Duke this coming Monday & Tuesday (2-3 March) for his second round of chemotherapy. He'll have an EUA in the morning prior to receiving chemo. The EUA will be at the Eye Center where Isaiah's Pediatric Opthalmologist will make sure his right eye is still okay. Because Isaiah is still neutropenic, his ANC will have to rise from 480 to 1000 by Monday to receive chemotherapy. If his ANC is below that we'll have to go home and wait a week.

We'll travel to Florence, SC on 5 Mar for Isaiah to be fitted for his prosthesis by Mr. G. Then we'll travel to Mr. G's office in Greenville, SC on 10 March to pick up the fake eye and make sure it fits.

My grandparents are currently taking the long drive from Kansas to North Carolina to stay with us for a couple of weeks. They should be here Friday. Erica and I are excited and blessed that they're coming.